Wednesday, February 13, 2008

I'm not as 'important' as I used to be.......thank goodness!

Today I was caught out and reminded how much my self-identity has changed in one year. A year ago my identity was: Academic, scholar, writer, lesbian, athlete, partner, gay Christian, and business owner. Our world, our society is one in which what you DO, what you print, what job position you hold and what opinions you hold are paramount. Your opinion from feminist theory, queer history, literary or cultural criticism, right down to your views of TV shows or movies is based on who ARE you exactly, and what have you done, what are your credentials.

Last year I made money going back and forth from Port Angeles mailing items from Ebay, I made several hundred a month (a couple days work, enough to pay for Epee), I met some ebay sellers who offered to fly me to their state to help them with their business. I used to see killer whales so often that when people crowded to the windows I didn’t even bother to look over. I spent tens to hundreds of hours editing a novel to send to Arsenal Press. I wrote small articles and was working on academic papers. There was an academic conference in Oregon I was thinking about going to. I was looking at different jobs.

And then I became God.

Hey, that was a more interesting sentence than saying my world changed. They say that when the scales fell from Paul’s eyes the world had changed. Whatever your religion there usually is some sort of reminder that we are but grass, or flowers that bloom then fade. I became sick, and sicker, and was sucked into a system in which the only importance is the person evaluating you; the only significance of you is that you are there. Before you were that list: Academic, blah, blah. Now you are just “a patient, XX years of age, displaying…” You get sicker and people come to help, not because you did things of worth, or because you are special or deserving but because you are in a system, and that system will sometimes save you and sometimes fail you.

But then you rise above the system; you become yourself again. Only now, you have a list of new names attached to you Elizabeth McClung: Nerve Damage, Autonomic Failure, Degenerative, Secondary Raynaud's, Assisted Bathing and Eating, Terminal. And while this does not define you it does dictate a great deal of your day. And you rise again.

People say, what would you do if you had one day left to live? And some would take trips and some would get drunk and some say they would go back to work and live the day as normal. But really, this isn’t something you can answer until you know. Not knowing just because of the health stats or doctor judgements but in what you see and feel on a daily basis that every day and every week and every month is quite realistically the last. And then how important is it if people don’t care that you used to be or may be one of the top researchers of pulp Victorian non-linear storytelling? How important is it that you came in 6th or 7th at this or that tournament? How important, compared with spending the evening with your partner, the person you love, that you wrote a book and got accolades? Not at all. And you would trade it all to be out of the wheelchair and the hospital bed to simply be awake 18 hours a day, to have a job sweeping a broom and be able to walk across a field of flowers while walking home the one you love. But you don't have that trade to make.

So then you rise.

Because, like being left handed, or having bad vision, you can’t refuse to accept all those medical things attached to you now, but you can’t live there either. So when the medical tests and the appointments start to clear and you realize that yeah, all that stuff before seemed really big and you remember the conversations you had which were SO IMPORTANT a year ago and would make you break out in hysterical laughter now. Oh no, are people really drinking at Starbucks instead of Independent coffee houses!? Don’t people understand that many of the ideas brought up in the hit TV show Supernatural is ripping off (inaccurately) ideas brought forward by Victorian writers, and Wilkie Collins in particular? Hahaha! Is that really what I spent my time doing?

I always wanted to work with the group Doctors without Borders: the idea of no recognition but the need comes first. I guess, you might say I inherited a home project: Every day, I work at saving a life, at keeping a series of lives in balance; not just me but my caregivers and inherited family. I would like the chance to finish editing that novel and write another one. But right now I have a more important job; in one year, I have had the chance to experience what would take even most neurologically ill people several years: from hope to terror and back again. I need to get that down. That is important. Several people, including my home care worker say, "You can speak for those who cannot." I don't know. But if by telling my story again and again I can, then I will try.

Next week is the anniversary of the last time I was able to WALK outside the door of my apartment. I went four blocks, resting frequently and took a picture of some early flowers blooming. A year ago next week.

I used to be anguished by the question: What purpose does this serve? I could not see why I was sick, I could not understand how or why I was this way when I was SO TALENTED, when I could do SO MUCH ELSE. Now, I look back at the life before this year and I ask, “What purpose did it serve?” The world didn’t need me, in fact, in the ego centric view of society, I think we all fool ourselves that we are needed as much as we hope we are.

I do things now because I believe them to be worth doing. I post because I WANT to, not because I am serving the greater good or doing something amazingly important but because I want to know what everyone from Kathz to Ms. Bond are going to say, I want to hear from Raccoon and Cheryl, from Lindsay, Dawn and Lilwatchergirl. I can’t list all the names that I look for. Is this important? It is to me. It is to Linda.

I don’t live for today, I don’t live as if this is my last day, or last week or last year. Yet I believe that I will make what difference I make because people are amazing and oddly, it is the ones who don’t get paid who seem to care the most. I am not going Zen (sorry Neil), I am not going mystic, I am going practical. What is better than an evening with pain at a manageable level, and knowing that I have fulfilled the goals I set for that day. Plus I have some ice cream to eat. And maybe tomorrow the sun will shine, and I will feed a squirrel. Or I could be doing an all-nighter to crank out another paper to make sure my publishing credentials for this year will look good on my resume.

Hahaha! Seriously, didn’t that last line crack you up? I used to think like that. I used to act like that.

My retort: I just kissed Linda.

I do wish I could see the whales again though. Too bad I was so busy being important and busy. What a prima donna. Think I will go kiss Linda again.

20 comments:

Cindy said...

I'm glad I found this today! I"m mother to a child, (soon not a child- in his mind, pre-teen
in mine) who cannot always speak for himself, and
sometimes needs a wheelchair to move freely...

I too laugh at what I once thought important.
and sometimes I rage at what others deem
unimportant...

but right now, my son is happily playing in
the next room, and we're getting ready to
make icing for our valentine cookies, and
it's so much more than any 'purpose' I once
chased...

thanks again!

ms bond said...

If I could do just one thing today- one great uncommon thing- one thing out of my usual routine- one thing that I knew would make a huge difference in my life- one thing that would make me smile and make my heart jump and dance- I'd give you the whale watching. I'd fly a plane and we'd swoop over the ocean looking for whales. And maybe we would see them. Maybe not. But we both know that they are there. Thank you. Beautiful and perfect.

*Just a side note- I can't fly...but I know where to steal a plane? does that count?

sarah said...

you totally made me cry. thanks for this. i cried because it made me think about my partner in great unexplainable pain and my mom who died after a long illness. it made a lot of sense to me.

and thankfully without the saccharine bs that usually accompanies this sort of piece, if you know what i mean.

Tayi said...

I could not see why I was sick, I could not understand how or why I was this way when I was SO TALENTED, when I could do SO MUCH ELSE.

This is something that I've struggled with a lot. Not that I think that talented people have some sort of right to better health, but that it seems like my life is such a waste now. Everything I valued about myself was destroyed, but I was still alive, and it took me a long time to find out what was left of me.

I still don't quite know how to be happy as an invalid. The little, everyday efforts at happiness I can do, but the gaping existential hole, that question of Why am I Alive If My Sole Purpose is Drain on the Medical System, it still swallows me up sometimes. I guess you're better adjusted than I am.

em said...

Thank you for this. I come here because I appreciate your perspective, and never as much as I do today. Could I copy this and keep it privately to remind me?

Elizabeth McClung said...

Cindy: Thanks for your comments and for commenting. Since my wheelchair anniversary is coming up I am having the "nostalgia" days, arg! But like going to a new country, I can't spend all my time thinking about the past, and quite honestly, when I try to put some of the past into now, it just seems very funny; ludicrious. Living day to day isn't a glam job, but it still needs to be done, right.

Ms. Bond: Well I know where the whales are (in the striat, in a pod) so you steal the plane and if you can do the pedals I can do the stick thing (I did a lot of flight sims). Turns out to not be a sunny day, alas, so will have to hatch a new plot.....oops I mean plan. Thanks

Sarah: Well, I think saying that I didn't have the saccharine bs is a great compliment, the best I've recieved in a while. Yeah, not plucky, not a trooper, probably still a tad ego centric but getting on with getting on each day (after I find someone to tell me what day it is - sorry, disability humor)

Tayi: Wait I minute, I defend my right to be NOT well adjusted. Hey, you know me, I alternate between whine fests and fantasy and today was just a bit of "I know I THOUGHT I was important and people TOLD me I could offer so much but, the world does still seem to run"

Believe me, I had and still have the: "Is my only purpose to keep many people employeed in the medical industy" - but not today (for me), today is for having a short attention span I think, something cool to drink, something to smile about, taking a break from the complicated. Thanks for sharing your struggle and again, I wish I had the magic wand but really, I don't believe in OZ and the wizard and clicking heels. Just keep me away from flying monkeys!

KateJ said...

Beth, I'm only sorry that I didn't know you "before" all this happened. Though I've been back through the blog and seen how things were for you before. I've just read out (very!) selected bits of your latest post to my mother, who has gone from being active, enquiring, involved, helping other people - generally doing pretty well for an 80-year old - to being virtually unable to walk, on medications that have dulled her senses to the extent she can hardly bear to eat, and seeing no future of any value, least of all with any joy in it.
I keep telling her she is still that person she used to be.

I'm not going to be trite enough to say that you are still the person you used to be. Because you're not. Another trite comment: we're all changed by what happens to us, good and bad.
I can only say I feel stronger for having met you, if only via your blog (and via Zed). Still hope I get to meet you for real one day.
ps... keep thinking about that Japan trip.

alphabitch said...

"I don’t live for today, I don’t live as if this is my last day, or last week or last year. ... I am not going Zen, I am not going mystic, I am going practical."

Oh, that's lovely, my friend. That's going up on my bulletin board.

Elizabeth McClung said...

em: ah we posted at the same time, sure, please, use as benefits you - repost, reprint, whatever. Thanks for letting me know it made a diff.

Kate J: Ooops, well I didn't miss to diss your mother, I think the essence of me is the same, just all the stickers I had on me saying "look at me!" might have fallen off. And I do think I have changed a bit.

I am glad you read the blog and I read yours (When I can...oops) and meeting in real time, face to face would be cool - why don't they invent transporters.

Alphabitch: Woo HOO! I get the coveted Board spot. Seriously, thanks.

FridaWrites said...

You mention that your health care worker says, "You can speak for those who cannot." This is true--a lot of people with disabilities don't have the background or resources they need for advocacy, or lack the physical ability at a given time. One of my friends was told this, too, when nurses yanked her vent cords and moved her in painful ways. Most every other patient they'd had on vent couldn't communicate, so they weren't aware they had been hurting them. They didn't pay attention, didn't notice the increased coughing or flinching was because of their actions. Besides causing abled people to (re)think, writing about disability is affirmative to people with similar experiences.

I am sometimes reluctant to advocate/be a voice for disability, considering myself (even now sometimes) "not disabled enough." But for me, not disabled enough, if that's true, means sometimes I may be able to do more advocacy work than others can currently do. Advocates and allies of all abilities are needed.

KateJ said...

Hmm yes I see how you could have read it that way (about my mum I mean). Maybe you did put a curse on her!
The bit I read and that she related to was what you said about being 'labeled' by the health and 'care' systems. In her case "80, diabetic, hip fracture, depression" which has replaced "opera-lover, church activist, keen cook, knows about French films."
Maybe next time I ought to read her some of the racier bits from some of your other posts, now there's a thought, some of the lesbian goth stuff perhaps... or the vibrators... well, no perhaps not. Maybe I'll just show her the squirrel pictures.
It's getting late and I'm rambling again... good night!

cheryl g. said...

Thanks for the post. I am sharing it with some of the people in my office today. (CS's comment was - Wow, she can really write!)

"...in fact, in the ego centric view of society, I think we all fool ourselves that we are needed as much as we hope we are."

I have to agree with you on that one.

Sis, you may yet see the whales again and in the meantime you can keep kissing Linda.

Elizabeth McClung said...

Kate J: Oh golly I just read it again, When I wrote "Miss" I mean, "Mean" so I was saying "I didn't mean to diss your mother" not I didn't miss to diss" which implies I am gunning for her, which I am not - I just have a not so functional fingers and brain - honest! Sorry!

Neil said...

Hi Beth and valentine/Linda:

A year since you've gone for a walk; sucks as an anniversary, I suppose, but you've learned a lot in that year. And you've taught me a lot; and others, I'm sure (eg: Cindy).

None of us are immortal; most of us act like we are, and squander a whole lot of living. I know I have...

You don't have to be plucky or a trooper, Beth. Or a mystic, Zen or otherwise. And you never have to apologize to me! I'm no Zen master. I'm a devout agnostic and underemployed husband and father, leaning slightly towards Buddhism. The zen hugs I keep sending you are from Anne McCaffrey's & Mercedes Lackey's "The Ship Who Searched" They're hugs that you'd give if you were there to give them, but you're not, so you WISH hugs upon the person. And I'm wishing you and LInda manymanymany zen hugs tonight.

May you endure the bad days, and treasure the good ones. Treasure Linda too, and kiss her. Again, and again and again and...

Many zen huts to everyone!

Michael said...

It's easy to take things for granted.

"Before you were that list: Academic, blah, blah. Now you are just “a patient, XX years of age, displaying…”"

Dehumanizing, isn't it? And then, since you are now "just a patient" you get treated as an object. One of the hardest things that I had to do was to get used to the lack of compassion, the lack of touching...

"And you would trade it all to be out of the wheelchair and the hospital bed to simply be awake 18 hours a day, to have a job sweeping a broom and be able to walk across a field of flowers while walking home the one you love. But you don't have that trade to make."

That made me cry. Because, for the last 10-soon-to-be-11 years, that's where I've been. I'd even settle for keeping the wheelchair, just give me back my hands.

Now, to change topics to something slightly less emotional:

"Don’t people understand that many of the ideas brought up in the hit TV show Supernatural is ripping off (inaccurately) ideas brought forward by Victorian writers, and Wilkie Collins in particular?"

I can see Victorian writers in general, but I've only read a couple of Collins. It seemed to me that he was more writing mysteries, what would nowadays be termed more thriller or suspense. Other Victorian stories that I've read were more morality tales & fables expanding on oral folk tales which were, in themselves, morality stories.

Next week is the anniversary? Are you having a party? Not that I'll be able to make it -- it takes a lot of planning to travel -- but you should. Celebrate what you can of this past year. Anticipate the good times that will be coming up. Have a bite of cake for each one of us that can't make it. Hide for a few minutes in the bedroom with Linda (just not for too long -- you have guests!).

Don't overdo it, though!

Now, go feed a squirrel. And kiss Linda again.

Michael

Elizabeth McClung said...

Frida: You make good points, but while I have no issue standing up as a lesbian advocate, I feel like I was sort of parachuted into disability and am very thankful for the kindness of those people with disabilities/impairments and how they helped coped through many stages. Thus I wouldn't feel comfortable standing up and saying, "People with disabilities feel..." But I can say, "This is how I feel..." and if that helps some people to "get it" or others to say, "I feel what she writes" then all good. I just want to respect those who have been living and fighting the actions and the home care just as I do, but for the last several years/decades and will be once I am gone.

Cheryl: Thanks, I'm glad other people liked it, I dunno why some days work better on writing with others (I wrote I think 8 hours that day). And yeah, more Linda, more Whales, and less ME.

Neil: Yeah, you sort of remember, "The day when" and thanks to blogging, ironically, thought I didn't post it, I know exactly what day it was. I think that, not to sound odd, but being ill and disabled has been one of the most intense learning experiences of my life. Learning not just about all these individuals and voices I had been ignoring, but about myself and what really did matter to me after all. And that I am no where near as tough as I thought I was.....and yet, far, far tougher (because there simply is no other choice).

Thanks for the Zen hugs but let's back up a second.....are you trying to say that I'M not immortal? I knew OTHER people weren't...but me too?

Sorry - hee hee.

Michael: Yeah, it is a "new world" you enter into - so you don't consider nerve biopsies and blood tests as "touching" then? Odd, I never found them very affirming of human contact eiher.

"I'd even settle for keeping the wheelchair, just give me back my hands." - well that made ME do a big sigh because that is my new territory, intermittent hand use, limited function, a bit more off each week (sounds like a hair cut). So I imagine the day I stop typing (not just for a day or two but voice software/dictation or nada) will be another date I will remember. So yeah. I have only a sliver of what you feel and....Sigh.

Collins did a lot of stuff which fell off the charts, like his female detective and other reprints done off and on by Dover, he set the standard even if someone else wrote "Woman in Black" (notice they haven't done that one yet, just Woman in White) and also introduced the independant author, which a host of vicotorian female authors from Nesbit to Riddell were waiting for - live by writing, even as a woman. But for example, thier second story, Windego, was a Victoria Ghost story reprinted in a Canadian anthology (I think under the title "feet of fire" - Actually, I should start a "Supernatural Thread" - I credit Collins because unlike Le Fanu, his ghosts had limits, his spirits bounds or mortals pushing them - while Le Fanu and the great writer (ahh, escapes me, Oxford Don, used to write them for Halloween reading - M. R. James!) - the spirits were not nice, had no rules and you usually if not always died. Scary, but not good for TV.

A party is an idea that had not occurred to me and I will take you up on it. PAR-TY, PAR-TY. Let me know if you can make it.

lilwatchergirl said...

Have tried to post this twice now, so apologies if you get it three times...

You're important.

I've been reading your recent posts... I just didn't know what to say. But I'm reading. Yours is one of a few blogs that I just can't *not* read. Did you know that The Girl and I talk about you as if we know you? And of course, we don't, not really. But your writing makes us happy. Um, I hope none of that is too weird. :D

So. Thinking of you.

Naomi

raccoonKathleen said...

I have a party every year around the anniversary of when I decided to keep living, to not give up, to not waste away.

Just so happens to take place about two weeks after my accident. The first couple of years had a lot of people show up -- everyone was still close, then. Now... just a handful of people, potluck buffet, cupcakes instead of a cake...

Raccoon/Michael

Elizabeth McClung said...

Raccoon: Yeah, well, I have noticed that people tend to have a heavy drift factor, and I am not sure why, is it that we are two different conveyor belts with different speeds? I wish I could interview them but since my own sense of time is messed up (Is it Feb already? What, it is 2008?), usually it is a month or two until I realize they are sort of not there.

Gaina said...

(((HUG)). It's so interesting to see how a person who as become a wheelchair user acknowledges the importance of the small things, the subtleties (sp?) and the the simple pleasures. I always think that's the one thing that makes me lucky to be disabled, getting such pleasure from tiny 'happenings' in nature and details that other people miss. You feel like you're part of an exclusive club that was given the treat of seeing the small but significant things.